My journey began at age 13 years when I was diagnosed with scoliosis. I was totally derailed, forced to sell my beloved horse, and could not wrap my mind around this condition. The surgery at 14 years to correct my curvature of the spine was horrible. The pain after surgery was so intense that the painkillers the nurses gave me did not help and I begged for more, always being told that I would have to wait. It was also the first time I’d seen my dad cry. After all, his little “pumpkin” was suffering horribly and everyone except for him thought that I was being a Drama Queen. The pain subsided in two weeks.
My life was not pain free after surgical removal of the rods in 1989, but I was able to live some semblance of a normal life for awhile. I bought another horse and rode, roller bladed, loved walking and jogging with my dogs, watercolour painted, camped and played guitar. If I hurt myself, my doctor would throw narcotic analgesics at me, tell me to rest a few days and considered the problem “cured.” It was a band-aid solution and he couldn’t be bothered giving me proper advice to what I should and shouldn’t be doing nor ordering an x-ray of my spine. Living with an abusive spouse did not help matters either, and so when I left him in 1999, I also left my life, beloved horse and one of my dogs behind. A deep sadness lingered with me for a long time afterward.
The damage from the surgery (and probably my previous lifestyle) came to a head in February 2001. I woke up and couldn’t move, the pain was so intense from my neck to my tailbone that the only reason I got out of bed was because I needed to use the bathroom and go to work. I didn’t make it to work and instead ended up at a chiropractor who x-rayed me and told me that things did not look good at all. The disc fusions, bone spurs, spinal abnormalities, brutal muscle spasms and severe osteoarthritis would be with me for life, always causing me pain and discomfort. I refused to accept his diagnosis, and I hid my discomfort by going to a doctor for pain medication. I did not look like I was in pain (what does pain look like?) and worked on my fitness as much as possible. I wanted to be normal! I took over the counter pain medication too, contraindicating the amounts so that I could get some relief.
An eight month course started my symptoms back up again and so afterward I worked contract/temporary assignments so that I could give myself breaks to recover from my pain. When I started working permanently as a legal assistant in 2003, I was able to buy my own condo. But days of sitting at a computer would put me in agony. I would explain to my family M.D. the excruciating pain, but it fell on her deaf ears. I was given more narcotics, but was told that I was “just imagining” the pain. I refused her offers of antidepressants because I knew in my heart that I was not crazy! In 2005, I took a job at a big law firm assisting three lawyers, and the stress combined with my pain made me want to die. I would limp horribly at the end of the day and couldn’t stand up straight, and the shocks of pain that started in my lower back and went around my hip, through my pelvis and down my leg to my knee was so painful that I feared my leg would give out while I walked. I was devastated to be accused of being a fake by my doctor, my family and friends alike, and so if my pain was imagined, I should be able to just “will it away.” I needed to get away from the awful, excruitiating pain along with the emotional hurt of not being understood.
Early in the year 2006 I was again unemployed and still under poor pain management from my female M.D. No one believed my struggle with pain because after all, I still looked good and “normal” even though I was in agony. At the end of 2006, I took a job in a law firm as a receptionist. Although it was a step down from the stresses of being a legal assistant, I was still given a large work load and the physical demands of the job magnified my pain to such an extent that I became angry that my body did not respond to my mind or to the drugs the way I wanted. I slowly started losing weight and was unable to properly sleep. I also started thinking of suicide, and when I did sleep, I had terrible nightmares.
One day on a visit to my pharmacy I was unsympathetically informed that they were out of my prescription and that it would be two days before it was in stock. That pharmacy treated me like a drug abuser and so I immediately went to a different pharmacy where the pharmacist Brian quickly filled my prescription and gave me some water so that I could take it. He treated me like a real human being with a real condition. I cannot thank him enough for his compassion and caring and I am still with that pharmacy today.
My doctor would sparingly give me pain medication and they temporarily freed me from my pain. Still, I would feel so bad that I couldn’t eat or sleep. I began to constantly grind my teeth day and night, which left my jaws aching. Getting out of bed in the morning, doing my hair and makeup and walking to work was agonizing. My employer would frown at my wearing of running shoes with my office attire, never mind the times I was late for work or was found laying flat out on a couch in one of the spare offices. Eventually at the end of 2007, I was forced to quit my job because of my illness and at the same time my M.D. dumped me as her patient. I was jobless, doctorless, out of medication and in agony. I felt worthless and unvalued, and thought of suicide constantly.
The new family M.D. that I found did not help me either. He gave me new and stronger narcotics, but they were in controlled doses and I prayed that I would not have any breakthrough pain so as to make it through the month to renewal. He ignored my complaints of the debilitating side effects that left me a Buzzed-Out Rug Slug. He also accused me of having “pain in my head” and that the medication “should cure” me. What a joke! Again I refused the antidepressants and sedatives he offered me. Although the Pain Clinic advised him to give me more drugs, eventually those stopped working and again I was back to dangerous combinations of medication, marijuana and alcohol.
In the meantime my dentist recapped all my molars. Because they were worn down to the nerve roots, repair was painful and I was unable to continue grinding them – a blessing in disguise for my poor teeth anyway.
A consultation with a surgeon only gave me a “do surgery and see if it works” attitude with no guarantee. I would not accept that. Spinal injections were complete torture. The injection site was not easily accessed and having my spine poked and prodded with a long needle until I was doused in sweat, tears rolling down my face and gagging with nausea from the pain was too much for me. The injections lasted maybe two weeks, and I stopped going there altogether. The thoughts of suicide lingered and I fought hard against them.
My attempts to return back to work would only exacerbate my condition and again I would find myself unemployed, psychologically beaten and physically depleted even though my employers praised my abilities. My only escape was my art, and at times I propped myself up in bed and practiced drawing and painting. And I stuck with my resolve to be the woman I wanted to be, a good person with character and integrity no matter what. It was all I really had and I clung to it desperately.
Finally in March 2009, I consulted with an M.D. who was trained in the fields of Chinese and holistic medicine along with Anaesthesiology. She examined and told me that I was slowly dying from my extensive past prescription and non-prescription drug use. My body and mind were fighting to stay alive and to keep from shutting down. I bravely listened to her tell me that my spine would never be healed and that I had a big heart and a shining light within me. Unfortunately, my former journey of pure torture and hell left me physically and emotionally exhausted, resentful, mentally and spiritually in a dark place. She also told me that because I had been over-prescribed narcotic analgesics, my tolerance for those drugs had built up so high that they most likely would never again be effective for me. Knowing better not to cry in front of an M.D., I got to my car and bawled like a baby.
I am now in no shape physically or mentally to endure the demands of any job. Some of my friends discarded me like a piece of rotted meat. I now realize they don’t have the capacity or the desire to understand the full impact of a condition like mine, and my good qualities as a person means nothing to them. That hurts me just as much as my physical pain. But at least I now have my family back and a few awesome friends that love and value me for who I am. I am grateful and feel blessed because of them.
Another visit to the Pain Clinic gave me a new prescription of anti-seizure medication and with that came a new set of side effects. I feel lethargic, moody with a poor appetite. Every joint in my body hurts and my hands and feet swell to astronomical proportions.
My vision blurs and I cannot paint without struggling to focus or grip my paint brushes properly. At least it subdued my nerve pain, but not the osteoarthritis pain. I still need some mild painkillers for relief.
Thus, my journey continues and I will be working hard toward staying clean of my addictions, following the direction of my new M.D. and the Pain M.D., visiting an Osteopathic practitioner, continuing with my physical fitness, doing Active Release Therapy with my chiropractor, more massage/muscle therapy, and a follow up visit to the Pain Clinic.
I hope my journey ends in a good place.